Hi I'm a little freaked out as recently diagnosed with sjogrens with very little to complain about no dry eyes or mouth just a little joint pain and tiredness but already my thumb joints and fingers feeling worse and I am Ill in bed it started Thursday diarrhoea thinking I'm going to be sick feeling so bad but not being sick I thought I had a bug as started to feel better yesterday, but now I woke 6.30 going to be sick but really had the runs and tried to be sick but just gagging. I just dont know if it a bug or is it something to do with sjogrens? 5 weeks ago when I was menstruating I had diarrhoea for a week but felt ok with it not the way I am now in bed does anyone have any idea, I'm new to sjogrens and a little freaked out and scared about the future. :-[
Sounds like a bug to me. Go ahead and give your dr or her/his nurse a call though as seems like some stuff goes around. You might have an "instacare" near you too if dr out. Might put you on a BRAT diet for awhile to give the stomach a rest.
Being stressed doesn't help either. When my mother was in the hospital I had stomach problems, dr gave me a med. and told me it was the stress. My dad used to say I had a "nervous" stomach.
Sjogrens is different for everyone so don't freak out after reading all the stuff that you "could" get. Focus on what you can do and deal with things when they come. I scored a 1 and 2 on the Schirmer's test =very dry eyes, but they only bug me at extreme concentration and long days on the computer at work, almost never. BUT others here tested with higher numbers and there eyes give them all kinds of problems. It just depends.
I don't know how much you've been told about Sjogrens. Basically it is your immune system in overdrive. I equate it to Ali out there swinging all the time, being tired, and not seeing the guy sneak up behind him. Dryness is a big issue and you are more vulnerable to get stuff. You learn to take better care of yourself. AND as a women, I know that is hard as you are used to taking care of everyone BUT yourself. But you learn.
Welcome and Good Luck!
Hi Suelaw and welcome,
Before I received my formal diagnosis of Sjogren's and before I started the meds Plaquenil, Evoxac, Restasis etc,. I was frequently ill as you describe. I would often wake up in the middle of the night with violent bouts of vomiting and or diarrhea. I attributed it each time to either having either food poisoning or a bug.
At one of my first appointments with a Sjogren's specialist, her first question for me was
" has the vomiting started yet?" That answered my question as to why I was having those symptoms.
Six months into treatment for Sjogren's, the nausea, vomiting and diarrhea have subsided. Are you on any medications to treat the symptoms? I am relieved to know that I don't have a bug or food poisoning every third day. Thats not to say that I don't get sick some of the time, however, the constant vomiting etc. that I experienced before my diagnosis was definitely caused by the Sjogren's. I hope that you have a doctor on board who is helping you with this.
Take care and feel better.
Thanks, I am a bit stressed we putting our house up for sale and I'm a nervy person trying to keep my house perfect while dealing with the washing and feeding etc of four kids. The rheumatologist gave me hydroxychloriquine but I didn't take it after reading side effects think it to help joint pain but I'd rather suffer that than take it, however this tiredness with nausea and diarrhoea I would take anything to get rid of it. I'm hoping its a bug but if it continues frequently then I know it's not especially when a bug goes round our house we all get it but this is just me and last time when I had diarrhoea for a week just me again! My next appointment is in 6 months so I'm thinking I better make appointment with local doctors and ask them about sjogrens but I've got a feeling they won't know anymore than is on the leaflet I got. Glad you guys are in control of your sjogrens and have learned to deal with it, I've still to let it sink in and accept things although I'm hoping life can carry on as normal snowboarding this winter for hols! I really appreciate your reply thanks, still in bed yeuch!tomorrow a new day:-)
That is actually how I got my diagnosis of Sjogrens. For 2 years prior I suffered from frequent bouts of vomiting and stomach trouble. I thought to myself, how can I be sick every other week! It was causing me to miss work on occasion or feel dead tired from being up all night.
So I can relate to your feeling scared about why your not feeling good. Hang in there. I know I'm sure hoping that the Plaquenil I started may make a difference!
Suelaw, this is why I advise AGAINST looking up "side effects." They are rare. You see more mention of them here on this board than you will otherwise, because people on here are sicker. There are many people with Sjogren's who just go on with their lives. With the help of plaquinel, their fatigue and joint pain are greatly eased, if not gone.
Plaquinel is a wonderful drug. It has helped many of us vastly. The vision impact is extremely rare, particularly at the dosage we take it. It is far more common at the dosages that people take it for malaria. With proper vision care, including baseline peripheral vision tests before you start on it, you can easily detect the beginning of vision impact and get off of it and prevent it.
Take your medications with optimism. They are prescribed because they WORK for the vast majority of people. If something changes in a way that is distressing, only then should you look for side effects. If you have stomach issues, split the dose or reduce it until you adapt to it.
The reason for this is the "nocebo effect." Like the placebo effect, where you think you feel better because you expect to, it works in reverse as well. If you read about a supposed "side effect," you can induce it in you. This has been proven experimentally.
This disease is challenging enough without raising boogeymen in your mind. Foods are not "poisonous." Fluoride is not "poisonous." Medicines are not "poisonous." Your body may find that some things bother it. Most likely, they won't.
Good luck with the house sale! And the move.
Sharon
Sharon offers some excellent advice by advising against looking up "side effects" to drugs which do tend to be rare.
I had myself so uptight and afraid to take Plaquenil, until my opthamologist told me that she has had several patients taking this drug for various AI diseases and she has seen only one instance of damage to the retina of the eye due to Plaquenil. This patient was from India and had been on such a high dose for several years. The patient was taking so high a dose that would never be prescribed by any doctor in the United States.
Plaquenil is a great drug that enables me to go about life in a somewhat normal fashion. It has helped me so much with the fatigue, joint issues, stiffness, swelling and skin issues.
I know that moving can be stressful. Good luck with that and please try to give some of the suggested medications a try.
Quote from: LadyDi on July 06, 2013, 06:38:01 AM
Hi Suelaw and welcome,
Before I received my formal diagnosis of Sjogren's and before I started the meds Plaquenil, Evoxac, Restasis etc,. I was frequently ill as you describe. I would often wake up in the middle of the night with violent bouts of vomiting and or diarrhea. I attributed it each time to either having either food poisoning or a bug.
At one of my first appointments with a Sjogren's specialist, her first question for me was
" has the vomiting started yet?" That answered my question as to why I was having those symptoms.
Six months into treatment for Sjogren's, the nausea, vomiting and diarrhea have subsided. Are you on any medications to treat the symptoms? I am relieved to know that I don't have a bug or food poisoning every third day. Thats not to say that I don't get sick some of the time, however, the constant vomiting etc. that I experienced before my diagnosis was definitely caused by the Sjogren's. I hope that you have a doctor on board who is helping you with this.
Take care and feel better.
I am sorry to hear that this was your experience. Everyone's experiences are quite unique to the individual and not everyone experiences nausea and vomiting. I can't remember ever experiencing this but it appears that I went I diagnosed for more years than I imagined. Who knows- this may have happened sometime in the past and perhaps I wrote it off as a virus. Can you tell me why the md thinks it was Sjogren's related? I am only asking because I have not previously read this. If you have a link that I can read I would appreciate it.
Plaquenil has been good for the joint pain and some of the stiffness but I am still unable to stay on my feet for more than a short period without my body locking up. I still suffer from fatigue but it is not as bad as it was initially. Maybe things will get better with time.
Suelaw it does not make sense to suffer. You can have a better quality of life if you start treatment. It takes awhile for Plaquenil to kick in but it will help you be in more control of your life. I wish you well and keep coming back. There are many helpful people here.
Hi Suelaw
... and welcome. The hydroxychloroquine has given me my life back. I've been taking it three years now, and my energy levels are far greater than they were before taking it. Although I could never run a marathon, I can do most things now - and I was getting very debilitated before I took it.
It's well worth a try.
Hugs
Kathyx
Cassie,
It was a dentist who specialized in diagnosing Sjogren's who asked me about the vomiting. She is on staff at one of the big teaching hospital dental schools. I was seeing her for salivary gland function tests (spit test), which is one of the criteria of a Sjogren's diagnosis.
She said she could tell Sjogrens right away. I failed the salivary flow test, as my mouth was like a desert, my teeth and gums in poor condition and a terrible yeast infection in my mouth.
Maybe such a severe yeast infection could be related to her comment about vomiting. I'm really not sure, but after I began getting treated with medication the vomiting subsided.
A bad oral yeast can cause a yeast infection in the stomach by virtue of swallowing the yeast. It can cause heartburn that doesn't quit also. If you get the swish and swallow for treatment of the oral yeast it should also help the yeast in the stomach. Make sure to eat yogurt and cut down on your sugar intake. Sugar will also cause yeast to grow. It is sort of like adding sugar to the yeast for bread dough as it increases the amount of yeast.
Also, do not go to bed after eating sweets or drinking regular pop without rinsing out your mouth first. Good luck. IRish
I second Sharon and Kathy's posts.
I've had many stomach issues. You want to take the plaquenil, trust me. It will help give you your life back! I have had no problems with it at all. I take drugs other drugs whose side effects include death amongst a host horrible things as well. I have not had any problems. Try the drug. It takes a few months to work, but after that, if you think you're experiencing a side effect, your doc can change your prescription.
Hi,
Am new and just reading posts. I had abdominal pain and other gastrointestinal problems starting 20 years ago, on and off with no diagnosis. Right before Sjogren's diagnosis last year I was in bad shape with bloating, pain, diarrhea and low grade fevers. Since then this sticks with me and am treated by my long time GI doctor. He says I have Stage III disease. I have removed gluten products from my diet which seems to help some and also take domperidone and Dexilant for intestinal problems. Doctor says we can manage this part but it will probably never go away as it was not addressed early enough. I would urge you to get a GI specialist if you don't have one already. It is my worst complication. Good luck and don't give up, and please try not to be afraid, it only makes things worse by creating stress (I think).
Hi Suelaw,
It's part of the process, wondering if 'everything' is part of your immune-mediated condition, in your case Sjogren's.
That's one reason we 'check in' here frequently, to bounce things off other people and sometimes just to 'hear ourselves think"!
It would be a great help if you added things like your conditions, age, medications and treatments to your signature line.
Because Sjogren's "can affect" just about every system in your body, doesn't mean it will.
Every once in a while I get an gastrointestinal infection, less than once a year, but as a rule my digestion is fine.
My lungs are fine, too. And my kidneys, gall bladder, brain, and liver are excellent. (some would argue about my brain, but hey...)
hmmm, maybe it would be a good idea to make a list of things that are FINE!
Seriously, however, reading side effects of medications and possible complications of various conditions can really do a number on me if I'm not careful.
On the whole, however, I have found over the years that close attention is necessary, because I actually tend to miss what is developing.
That said, the things that have developed and had to be found by doctors (coronary artery disease, Sjogren's Syndrome, anemia, peripheral neuropathy, CVID-an immune-mediated immune factor deficiency) were all found and treated as appropriately as possible.
I take iron for the anemia and it's fine. I take statins and blood pressure medications for my CAD and it's under control. I only treat the Symptoms of Sjogren's. There isn't anything to do for PN except manage pain and exercise in the water since I can't walk well. For my CVID I'm still having tests and determining if I'll have the only treatment available...monthly infusions of IVIG.
When it doubt talk to your doctor. When one is diagnosed with a chronic condition, it is wise to be alert to what is going on.
Keep us posted.
Hugs
Elaine